Barriers to Urogynecologic Care for Racial and Ethnic Minority Women: A Qualitative Systematic Review

Abstract

Importance:

Studies have sought to evaluate factors that have perpetuated disparities in health care, including urogynecologic care. However, there remains a lack of understanding of barriers to care specific to racial/ethnic minority populations.

Objectives:

We aimed to report identified barriers to urogynecologic care (e.g. care for symptoms/diagnoses of urinary incontinence (UI), accidental bowel leakage (ABL), pelvic organ prolapse (POP)) for underrepresented racial and ethnic minority (URM) women in the United States (US).

Study Design:

We conducted a systematic search for studies through five electronic bibliographic databases. Inclusion criteria for eligible studies included: 1) studies reporting barriers to care for those with urogynecologic symptoms/diagnoses, 2) publication date year 2000 or later. Exclusion criteria included study cohorts with children, exclusively non-US populations, cohorts without URM participants, and studies without qualitative research methodology. Study methodology, characteristics, as well as barriers and facilitators to urogynecologic care were captured using a thematic synthesis approach.

Results:

There were 360 studies identified. Twelve studies met criteria: 6 had study populations with UI, 3 with POP, 2 on UI and/or POP, and 1 on ABL. There were 7 focus group studies (total 44 groups, n=330), 4 interview studies (total 160 interviews, n=160), and 1 had both (10 interviews, 6 groups, n=39). Most studies reported on patient-associated barriers (n=10/12) and physician/provider-associated barriers (n=10/12) while only half reported system-associated barriers (n=6/12).

Conclusion:

Identified barriers to urogynecologic care for URM populations were examined. Findings likely do not fully reflect barriers to urogynecologic care for URM populations. Comprehensive evaluation of social determinants of health and systemic racism within studies is needed to understand the unique barriers present for racially/ethnically diverse populations.

Simply Stated Summary:

This research reviewed all published interview-based research to identify reported barriers to care for racial/ethnic minority women with pelvic floor disorders in the United States. We found few (12) studies focused on this research topic, and we found that most studies discussed barriers to care that were related to the patient (such as embarrassment, shame, fear, misunderstanding of their symptoms/condition) or the health care professional (including poor communication and dismissal of patient reported symptoms) rather than health care system related barriers. Notably, racism was not identified as a barrier by patients.

Introduction:

Racial and ethnic health disparities in the United States (US) are a major public health issue^1–3. Braveman et al. define health disparities as a “specific subset of health differences of particular relevance to social justice because they may arise from intentional or unintentional discrimination or marginalization and, in any case, are likely to reinforce social disadvantage and vulnerability”¹. Interrelated, health inequity is a term often used “to differentiate health differences through to reflect injustice from health differences in general”¹. Numerous studies have reported devastating individual and population level impacts as well as significant economic costs and burden resulting from health inequities^4–8.

Racial/ethnic health disparities exist in urogynecologic care, which encompasses the management of pelvic floor disorders (PFDs) including accidental bowel leakage (ABL), pelvic organ prolapse (POP) and urinary incontinence (UI)^9–11. Numerous studies have generally examined barriers to urogynecologic care, including lack of knowledge on PFDs and reluctance to seek care, that may have perpetuated these disparities^3,9,12,13. Often, these studies are not generalizable due to small participant cohorts that are not racially/ethnically diverse. With this, there remains a gap in the understanding of barriers to care specific to racial/ethnic minority populations. Identifying barriers to care is an important step for strategy development in improving care-seeking and ultimately achievement of health equity for all.¹²

Much of the research evaluating barriers to care for racial/ethnic minority women has utilized quantitative research methods. All of these studies provide perspective some on barriers to care, many of which were identified were patient-related, provider-related, or systems related factors that can be captured through standardized survey designs. However, quantitative study methods can lead to data acquisition that is lacking in detail on the situational nuances contributing these barriers. In addition, given the nature of these methods, answer choices are dictated by the researcher and does not allow patient driven responses. Qualitative research methodology often focuses on individuals’ lived experiences, human behaviors, and social interactions¹⁴. These elements are essential to assess in racial/ethnic disparities research given the role of race as a social construct in our culture and its impact on healthcare. This review specifically focuses on qualitative research studies which can characterize barriers to care in broad, deep contexts.

In this qualitative systematic review, we aimed to examine and analyze identified barriers to urogynecologic care for racial/ethnic minority women in the United States. Through this process we sought to determine what is known about barriers to care as well as what important aspects of this area of research are missing or under-assessed.

Materials and Methods:

This review is reported as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, and the study protocol is registered (PROSPERO#:CRD42021279873). We conducted a systematic search for studies through five electronic bibliographic databases including the following: PubMed, Cochrane Library, CINAHL Complete, SCOPUS, Web of Science. We also queried the grey literature and Google scholar for additional articles to include in the screening process. Search of the electronic bibliographic databases was performed on November 2, 2021. Inclusion criteria for eligible studies included the following: 1) studies exploring barriers to care for those with urogynecologic symptoms/diagnoses, 2) study cohorts of persons with urogynecologic symptoms and/or diagnoses, 3) study cohorts inclusive of underserved and/or underrepresented racial and ethnic minority persons, 4) studies utilizing only qualitative research methodologies, 5) studies published in the year 2000 and later, 6) studies published in the English language. We elected to include studies published after January 1, 2000 given the potential impact of current events and culture on barriers to care. Exclusion criteria included study populations comprised exclusively of children (age ≤ 18 years) or biologic males, exclusively non-United States study populations, study protocol descriptions only, studies without available full text, and commentaries without original data. Using eligibility criteria, the titles and abstracts of the studies were screened for relevance by two independent reviewers. For all studies that met criteria, two reviewers completed data extraction for full text manuscripts independently. Additionally, the Critical Appraisal Skills Program (CASP) tool was utilized to appraise methodology quality for each qualitative study. This is a 10-item tool that evaluates the following aspects of study quality: 1) statement of research aims, 2) appropriateness of research methodology, 3) study design, 4) recruitment strategy, 5) data collection, 6) researcher-participant relationship, 7) ethical issues, 8) data analysis, 9) statement of findings, 10) value of research¹⁵. Reviewers evaluated each study aspect with indication of “Yes”, “Can’t Tell/Partly”, or “No”. Our team generated quantitative values for each quality aspect by applying a score of 2 points for “Yes” indications, 1 point for “Can’t Tell/Partly” indications, and 0 point for “No” indications. Total CASP score of 18–20 was deemed consistent with high quality, score of 15–17 consistent with moderate quality, and score of <15 with low quality. The CASP tool was completed by 2 independent reviewers. Any discrepancies in data extraction or methodologic appraisal were adjudicated by a third reviewer. Further, conflicts were discussed amongst all three reviewers until consensus was reached. Study methods, study cohort characteristics, as well as barriers and facilitators to urogynecologic care were captured as themes and codes within categories of physician/health care provider-associated, patient-associated and system-associated were extracted from each fully reviewed qualitative study using a thematic synthesis approach¹⁶. All studies were included in our analysis regardless of quality result. Meta-analysis was not performed due to the heterogeneity of study populations and study aims identified in this analysis.

Results:

We identified 360 studies through our search strategy (See appendix 1). After title and abstract screening, there were 116 studies eligible for full text review. There were 104 studies excluded after applying exclusion criteria. The remaining 12 studies were included in this analysis. Refer to figure 1 for PRISMA flow chart. Six studies included care-seeking and/or community-dwelling populations with the diagnosis of UI, 3 with POP, 2 with UI and/or POP, and 1 with ABL (figure 1). In terms of study design, there were 7 focus group studies (total 44 groups, n=330), 4 interview studies (total 160 interviews, n=160), and 1 study included both (10 interviews, 6 groups, n=39). Studies occurred in the following 6 distinct locations within the U.S.: 1) Philadelphia, Pennsylvania, 2) Boston, Massachusetts, 3) Los Angeles, California, 4) El Paso, Texas, 5) Albuquerque, New Mexico, and 6) Madison, Wisconsin. Only 4 studies specified if an honorarium was provided to research participants. Study characteristics are summarized in table 1.

Figure 1.

PRISMA Flow Diagram

Table 1:

Characteristics of Included Studies

Study Title Authors (year)	Study Aim	Target Population, Number of women, Recruitment location, Study Location	Race/ Ethnicity Study Participants	Data Collection Methods, Data Analysis Methods	Results by Race/ Ethnicity?
“La Perdida de Orina”: Hispanic Women’s Experience of Urinary Incontinence Longworth J, et al. (2003)	• To describe Hispanic women’s knowledge, experience, and coping behaviors with the symptom of UI. • To establish the validity and reliability of translated tools used in the parent study to quantify the severity of UI symptoms and quality of life with UI.	• Hispanic, low income with UI • n=31 • Recruited from medicine clinic • San Antonio, TX	• No race data • 100% LA ethnicity (n=31)	• Mixed methods • Focus groups (n=3) • Questionnaires to evaluate the severity of urinary symptoms and the impact of symptoms on quality of life. • Matrix analysis to conduct content analysis (Qualitative) • Test-retest scores for reliability and alpha correlations for internal consistency (Quantitative)	No
Developing A Cultural Model for Long-Term Female Urinary Incontinence Bradway CW, et al. (2006)	• To describe and analyze what UI means. • To discover how the meaning of UI is constructed and negotiated by women living with UI.	• Community-dwelling women with UI • n=17 • Recruited from clinical and community locations • Philadelphia, PA	• 65% EA (n=11) • 35% AA (n=6)	• Semi-structured interviews (n=17) • Narrative analysis • Thematic analysis	No
Seeking Care: Women’s Narratives Concerning Long-Term Urinary Incontinence Bradway CW, et al. (2008)	• To examine care-seeking behaviors for women experiencing Ul. • To describe individual experiences with Ul affecting sexuality and intimacy.	• Community-dwelling with long term UI (> 5 years) • n=17 • Recruited from clinical and community locations • Philadelphia, PA	• 65% EA (n=11) • 35% AA (n=6) • By focus group  ○ Group 1: 31% AA (n=4/13)  ○ Group 2: 50% AA (n=2/4)	• Semi-structured interviews (n=17) • Focus groups (n=2)  ○ UI care seekers  ○ UI have not sought care • Narrative analysis	No
Beyond Incontinence: The Stigma of Other Urinary Symptoms Elstad EA, et al. (2010)	• To characterize the stigma of urinary frequency and urgency and differentiate it from the stigma of incontinence • To describe race/ethnic and gender differences in the experience of stigma among a diverse sample of individuals.	• Community-dwelling with UI • n=75 women subgroup • Community recruitment • Boston, MA	• 33% EA (n=25) • 33% AA (n=25) • 33% LA (n=25)	• In-depth interviews • Grounded theory	No
Qualitative Inquiry of Patient-Reported Outcomes: The Case of Lower Urinary Tract Symptoms Welch LC, et al. (2012)	• To explore the value of qualitative methods for understanding and developing patient-reported outcomes of medical care for symptom-based conditions by examining the case of lower urinary tract symptoms. • To elicit respondents’ perceptions of their experiences with lower urinary tract symptoms and outcomes from seeking health care for their symptoms.	• Community-dwelling with UI • n=41 women subgroup • Community recruitment • Boston, MA	• 32% EA (n=13) • 34% AA (n=14) • 34% LA (n=14)	• Semi-structured interviews • Thematic analysis	No
Communication Between Physicians and Spanish-Speaking Latin American Women With Pelvic Floor Disorders: A Cycle of Misunderstanding? Sevilla C, et al. (2013)	• With the goal of evaluating the perceptions and barriers that Spanish-speaking patients experience, we sought to assess the effect of the initial visit with a female pelvic medicine specialist on disease understanding among Spanish-speaking Latinas with POP and/or UI.	• Community-dwelling, Spanish speaking with UI and/or POP • n=27 • Urogynecology clinic recruitment • Referral: POP (n=6), UI (n=11), POP/UI (n=10) • Los Angeles, CA	• No race data • 100% LA ethnicity (n=27) • Country of origin  ○ Mexico 70% (n=19)  ○ El Salvador 14%(n=4)  ○ Guatemala 4%(n=1)  ○ Honduras 4%(n=1)  ○ Nicaragua 4%(n=1)  ○ Peru 4%(n=1) • All Spanish speaking	• Interviews pre-/post-physician encounter (n=27) • Constructivist Grounded Theory	No
Pelvic Organ Prolapse: A Disease of Silence and Shame Dunivan GC, et al. (2014)	• To better understand both English-speaking and Spanish-speaking women’s experience with POP, including their perceptions, symptoms, and related healthcare interactions.	• Community-dwelling, Spanish speaking with POP • n=58 • 3 academic, urogynecology clinic recruitment • Referral: POP (n=6), UI (n=11), POP/UI (n=10) • Los Angeles, CA and New Mexico, U.S.	• No race data • Ethnicity not clearly defined in the English primary language group (n=25) • U.S. 80%(n=20) • Spanish primary language: Mexico 70%(n=23) South/Central America 27%(n=9) • All Spanish speaking	• Focus groups (n=8)  ○ 4 in English  ○ 4 in Spanish • Grounded theory	No
Urinary incontinence and Health Seeking Behavior Among White, Black, and Latina Women Siddiqui NY, et al. (2016)	• To qualitatively assess the themes surrounding treatment seeking behaviors in White, Black, and Latina women.	• Community-dwelling UI • n=113 • Community and medical center recruitment • North Carolina, U.S.	• 35% EA (n=39) • 36% AA (n=41) • 29% LA (n=33)	• Focus groups (n=12)  ○ Stratified by AA, LA, EA race and UI severity  ○ Groups with LA women conducted in Spanish • Comparative thematic analysis	Yes
Health Care Disparities Among English-Speaking and Spanish-Speaking Women With Pelvic Organ Prolapse at Public and Private Hospitals: What Are the Barriers? Alas AN, et al. (2016)	• To further define communication barriers by comparing common perceptions regarding prolapse and barriers to treatment between Spanish-speaking and English-speaking women with POP.	• Community-dwelling, Spanish speaking with POP • n=58 • 3 academic, urogynecology clinic recruitment • Los Angeles, CA and New Mexico, U.S.	• No race data • Ethnicity not clearly defined in English primary group • English primary language group (n=25)  ○ U.S. 80%(n=20)  ○ Spanish primary language (n=33):  ○ Mexico 70%(n=23) • All Spanish speaking	• Focus groups (n=8)  ○ 4 in English  ○ 4 in Spanish • Grounded theory	No
Barriers to Seeking Care for Accidental Bowel Leakage: A Qualitative Study Brown HW, et al. (2017)	• To describe and characterize barriers to care seeking for accidental bowel leakage among US women to inform development and revision of an instrument to measure these barriers. • To compare our findings with existing knowledge about barriers to care for urinary incontinence and accidental bowel leakage.	• Community-dwelling with ABL who had not previously sought care • n=39 • Age range 45–89 years • 3 academic, urogynecology clinic and community recruitment • Madison, Wisconsin	• 89% EA (n=35) • 8% AA (n=3) • 3% LA (n=1)	• Focus groups (n=6)  ○ Tool was revised after each focus group • Semi-structured interviews (n=10) • Content analysis until thematic saturation reached	No
Knowledge, Perceptions, and Attitudes Toward Pelvic Organ Prolapse and Urinary Incontinence in Spanish-Speaking Latinas Jackson E, et al. (2017)	• To explore baseline knowledge, perceptions, and attitudes of Spanish-speaking Latina women living in the United States/Mexico border on pelvic organ prolapse and urinary incontinence.	• Community-dwelling, Spanish speaking Latina women with UI and/or POP: symptoms of POP and/or UI (2 focus groups, n=10), diagnosis of POP and/or UI (2 focus groups, n=9), and women without symptoms or diagnosis of POP and/or UI (1 focus group, n=5) • n=24 • Urogynecology/gynecology clinic recruitment • El Paso, TX	• 100% LA ethnicity • EA (n=16) • Other (Latina, Mexican, Hispanic) (n=8) • All Spanish speaking	• Focus groups (n=5) • Grounded theory	No
Qualitative Analysis of Knowledge, Attitudes, and Beliefs About Pessary Use Among Spanish-Speaking Women on the US-Mexico Border Maldonado PA, et al. (2021)	• To explore the knowledge, attitudes, and beliefs related to pessary use in primarily Spanish-speaking women along the US-Mexico border, utilizing structured focus groups with guided discussions.	• Community-dwelling, Spanish speaking Latinas with POP • n=29 • Urogynecology/ gynecology clinic recruitment • El Paso, TX	• No race data • 96.6% LA (n=28) ethnicity • 3.4% other (n=1) All Spanish speaking  ○ Spanish only 75.9% (n=22)  ○ Bilingual 24.1% (n=7)	• Focus groups (n=6) • Grounded theory	No

Abbreviations

Race: AA - African American, EA - White/European American, LA - Latina/Hispanic

Ethnicity: LA - Latina/Hispanic

Pelvic floor disorders: ABL - accidental bowel leakage, POP - pelvic organ prolapse, UI - urinary incontinence

^*Some studies did not provide race for LA women or LA was considered a race Data are presented as n(%) (when possible)

In each of these studies, all participants were community-dwelling, and in 9 studies, participants were actively seeking urogynecologic care^17–26. Six studies included Black/African American women^{18,19,22,26–28}, and 10 studies Latina/Hispanic women^17,20–28. Five studies specifically focused on Spanish-speaking participant perspectives ^{20,21,23–25}. In total, 529 women were included in these studies collectively: 94 (17.8%) Black/African American and 258 (48.8%) Latina/Hispanic women. The remainder were White women. No other racial/ethnic groups (including Asian and Native American women) were represented in this cohort of identified qualitative studies.

Narrative Synthesis:

Upon review of the studies, identified themes emerged and were categorized as barriers or facilitators of urogynecologic care. These categories were then further subdivided by physician/health care provider, patient and system associated factors. Most studies reported physician/provider-associated and patient-associated barriers (n=10/12 and n=10/12, respectively), while only half reported system-associated barriers (n=6/12). Table 2 summarizes barrier and facilitator themes identified by study.

Table 2:

Themes of Barriers and Facilitators to Urogynecologic Care by Study

	Provider		Patient		System
Study Title; Authors (Year)	Barriers	Facilitators	Barriers	Facilitators	Barriers	Facilitators
“La Perdida de Orina”: Hispanic Women’s Experience of Urinary Incontinence Longworth J, et al. (2003)	• None reported	• None reported	• Self-reflection - Embarrassment (not necessarily related to care-seeking behavior) • Life impact – Isolation (not necessarily related to care-seeking behavior)	• None reported	• None reported	• None reported
Developing A Cultural Model for Long-Term Female Urinary Incontinence Bradway CW, et al. (2006)	• Communication – Lacking and not helpful, dismissive, minimization of symptoms, normalization • Limited evaluation/ management – No treatment offered	• None reported	• None reported	• None reported	• Information- Portrayal in media did not align with personal perception/ experience	• None reported
Seeking Care: Women’s Narratives Concerning Long-Term Urinary Incontinence Bradway CW, et al. (2008)	• Communication - Structure of patient-provider interactions, lack of meaningful communication • Limited evaluation/ management- Lack of urinary incontinence screening, lack of explorations of symptoms, lack of offer of urinary incontinence management options.	• None reported	• None reported	• Life impact – Persons more negatively impacted by UI sought care, lived more years with UI, overall considered themselves in “good” or “excellent” general health • Race/Age- Women who were older and white were more likely to seek treatment	• None reported	• None reported
Beyond Incontinence: The Stigma of Other Urinary Symptoms Elstad EA, et al. (2010)	• None reported	• None reported	• Self-reflection - Shame, embarrassment, stigma; reluctance to discuss condition in Hispanic women • Culture - Secrecy was more pronounced in Hispanic populations	• Gender - Women might be more likely than men to seek help for urinary incontinence	• None reported	• None reported
Qualitative Inquiry of Patient-Reported Outcomes: The Case of Lower Urinary Tract Symptoms Welch LC, et al. (2012)	• Limited evaluation/ management - No treatment offered due to urinary symptoms were not serious enough or normal part of aging	• Treatment – Even partial response or symptom improvement resulted in increased patient well-being • Trust – “Patient-provider relationships consisting of trust and respect for patient agency yielded satisfaction despite continuing symptoms”	• Knowledge - Lacked medical knowledge	• None reported	• Access - White respondents more often had at least two types of providers consider their symptoms (compared to Black and Hispanic)	• None reported
Communication Between Physicians and Spanish-Speaking Latin American Women With Pelvic Floor Disorders: A Cycle of Misunderstanding? Sevilla C, et al. (2013)	• Communication/Language - Interpreters did not improve patient understanding of PFD condition • Education/ information –Too much information was overwhelming even with interpreter services (Spanish speaking women with low health literacy)	• Trust – Provider to make best decision for them (Spanish speaking women with low health literacy)	• Self-reflection – Desperation • Knowledge - Lacked medical knowledge • Fear/Distrust - Treatment and surgery • Culture – Religion • Autonomy - Lacked autonomy in decision making • Communication/ language	• Knowledge- High health literacy	• None reported	• None reported
Pelvic Organ Prolapse: A Disease of Silence and Shame Dunivan GC, et al. (2014)	• Communication/Language - Lack of confidence in doctors and in interpreters	• None reported	• Fear/ Distrust - Treatment and surgery (Spanish-speaking only); lacked confidence in doctors, lacked confidence in interpreters • Self-reflection - Shame, embarrassment	• None reported	• None reported	• None reported
Urinary incontinence and Health Seeking Behavior Among White, Black, and Latina Women Siddiqui NY, et al. (2016)	• Education/ information - Lack of information (Black women) • Communication - Lack of screening for symptoms (dominant for Black, Latina women)	• None reported	• Knowledge - Difference in awareness of urinary incontinence by race (more in White women, less in Black/ Latina women) • Self-reflection -Increased secrecy in Latina, embarrassment present in all groups	• Life impact - Severity of symptoms (worse symptoms prompted care seeking behavior)	• Access - to a specialist (Latina) • Education/ information - lack of information (Black) • Resources - lack of resources (Latina) • Cost - economic concerns (Latina)	• None reported
Health Care Disparities Among English-Speaking and Spanish-Speaking Women With Pelvic Organ Prolapse at Public and Private Hospitals: What Are the Barriers? Alas AN, et al. (2016)	• Limited evaluation/ management - Discrepancies in treatments offered, only option offered was surgery, ineffective therapies, offered only conservative measures; Spanish-speaking less likely to be offered surgery while English speaking more likely to be offered surgery.	• None reported	• Communication/language - Spanish-speaking preferred Spanish speaking provider over interpreter • Fear/Distrust - Treatments including surgery, cancer; Spanish-speaking women had more resistance/ questions/ worries about the treatments than English-speaking (18% vs 8%) and more fear of cancer (24% vs 8%)	• None reported	• Information - Public hospital patients shared information barriers - internet overwhelming, information too detailed/confused, desired simple language while private patients wanted more information/ detail/explanation • Access - Waited too long for surgery to be scheduled	• None reported
Barriers to Seeking Care for Accidental Bowel Leakage: A Qualitative Study Brown HW, et al. (2017)	• Gender of provider – Lack of comfort with gender discordance	• None reported	• Fear/Distrust - Evaluations and treatments, prior negative experiences with provider/physician • Knowledge - Limited knowledge of diagnosis and treatment options • Self-reflection - Normative thinking, shame, stigma, self-blame, avoidance, denial • Life impact – Isolation	• None reported	• Access - Missed work, public transit, cost, referrals with need to repeat story	• None reported
Knowledge, Perceptions, and Attitudes Toward Pelvic Organ Prolapse and Urinary Incontinence in Spanish-Speaking Latinas Jackson E, et al. (2017)	• Communication – Providers downplaying or ignoring symptoms	• Language- No perceived barriers with language due to availability of bilingual providers and staff	• Fear/Distrust - Evaluation and treatments • Self-reflection - Embarrassment • Knowledge – Limited knowledge of diagnosis and treatment options • Culture - Alternative therapies given their affordable cost, ready availability, and perceived efficacy, presence of misconceptions about pelvic organ prolapse	• Cultural - Consulting with family, autonomy/ confidence in decisions, religion was not a barrier to treatment	• Cost	• None reported
Qualitative Analysis of Knowledge, Attitudes, and Beliefs About Pessary Use Among Spanish-Speaking Women on the US-Mexico Border Maldonado PA, et al. (2021)	• Limited evaluation/ management - More likely to be offered pessary in United States vs surgery in Mexico	• Trust - Facilitated acceptance of therapy - pessary trial	• Fear/Distrust - Evaluation and treatments • Self-reflection - Embarrassment • Knowledge - Limited knowledge of treatment options • Culture– Alternative therapies considered (e.g. massage, posturing), misconceptions about pelvic organ prolapse and pessaries	• Trust – Perceived benefits treatment (pessary), willingness to try pessary (related to trust and cost)	• Cost - pessary • Access- pessaries only available in United States	• Resources - free/ low-cost pessaries

Physician/provider-associated Themes:

Most studies reported physician-associated barriers specifically related to the provider-patient interaction (n=10/12). Two common themes emerged for physician-associated barriers: communication (n=6) and limited evaluation/management (n=5). Within these themes, participants reported experiencing a disconnect between what the patient desired from the provider and what was communicated to them. Specifically, studies reported barriers including providers’ minimizing/downplaying symptoms, normalization of symptoms, lack of meaningful interviews by the physician/provider, not engaging the patient, and lacking confidence in interpreters or interpreters not improving the encounter. Limited evaluation/treatment seemed to overlap with communication themes, and reflected lack of treatment, more conservative treatments being offered rather than surgery, and variation in treatments offered based on patient factors such as spoken language, race, or location.

Less common themes of physician/provider-associated barriers were provider education (n=2) and gender discordance (n=1). Black women reported they felt they did not receive enough information, while Latina/Hispanic women reported they felt overwhelmed by information and ultimately trusted the doctor to make the decision^20,22. Gender discordance theme information is related to participant report of discomfort with gender of the provider ²⁶.

There were 4 studies that reported provider-associated facilitators which were trust (n=3) and education/information (n=1). Care was facilitated when patients perceived the physician to be trustworthy. One study reported clinical care was facilitated in a setting where providers and staff were bilingual which improved communication²⁴.

Patient-associated Themes:

Common themes identified as patient-associated barriers to care in studies that reported them were self-reflection (n=8), fear/distrust (n=6), knowledge (n=6) and cultural (n=4). Self-reflection encompassed barriers to care due a patient’s sense of self after reflecting on why they did or did not present to care. This theme of self-reflection includes identified barriers of shame, embarrassment, stigma, secrecy, and avoidance. These negative emotions/thoughts represent how patients felt about themselves and how they may have been influenced by culture, society, family/friends, or previous experiences in healthcare. Studies revealed that emotional barriers associated were often related to patients’ response to an encounter with the physician and frequently resulted in fear/distrust. Knowledge barriers mainly centered around the patient’s lack of knowledge of the diagnosis, anatomy, and treatment options (both that options exist and understanding all options once presented). In addition, one study found differences in knowledge of diagnosis, analysis and treatment options by race, with high levels of knowledge in White as opposed to Black or Latina populations ²². Cultural barriers were reported more often in studies with Spanish-speaking and/or Latina women, which included secrecy regarding their pelvic floor disorders, religion, alternative therapies and misconceptions of pelvic floor disorders. Less common themes were life impact (n=2), communication/ language (n=2), and patient-autonomy (n=1). Additionally, the concepts of lack of public awareness of pelvic floor disorders and portrayal in the media were reported in 2 studies^18,21.

Patient facilitators were only reported in 6 studies. Life impact (n=2) was the most common theme but was only represented in 2 studies. Those most negatively impacted by their pelvic floor disorder were more likely to seek urogynecologic care. Other facilitating themes that emerged from studies include culture (family support for decision making)²⁴, knowledge (higher health literacy)²⁰, race/age (being White and older)¹⁹, and gender (being female)²⁷ were all associated with care seeking behavior. Notably, in the 2 studies that were comparative with both men and women patient cohorts, women were more likely than men to seek treatment, and older White women were more likely to seek care compared to Black and Latina women or men^19,27.

Systems-associated Themes:

There were 6 studies that reported system-associated barriers, which included access (n=4), information (n=3), cost (n=3), and resources (n=1). In this category, the information theme was broad, and it included lack of systems-level information and lack of media/social media information on PFDs generally and in racial/ethnic minority women^18,22,23. One study reported a facilitator, which was low cost or free pessaries²⁵.

Analyses by racial/ethnic group:

Barriers in Spanish-speaking populations and/or identified as Latina/ Hispanic

There were 7 studies that focused on Spanish-speaking and/or Hispanic/Latina women ^{17,20,21,23–25,28}. Common themes reported from Hispanic/Latina cohorts for physician-associated barriers were communication/ language and limited evaluation/treatment. Facilitators were trust and treatment of their symptoms even if only partial response occurred. Common themes reported in this group for physician-associated barriers were self-reflection, life impact, fear/distrust, knowledge, self-reflection, and culture. Many of themes overlapped but were similar across the studies. For example, women had limited understanding of PFDs, much of their understanding was based on cultural beliefs/ misconceptions, even though there was a distrust of the medical system, women looked to make a connection with the provider whom they would ultimately trust to make the best decision for them. Religion and family also came up when women discussed how they chose a treatment option. Secrecy was a recurring theme associated with having a PFD. In addition, there was not only fear of treatment, but fear of the PFD that it may be cancer or some other life-threatening condition. In terms of system-associated barriers, cost and access were recurrent themes in this group.

Comparison amongst Black, Latina, and White cohorts

Four of the twelve qualitative studies evaluated potential barriers/facilitators to urogynecologic care among White, African American/Black, and Hispanic/Latina groups ^22,26–28. Elstad et al. reported that Hispanic participants with UI were more likely to respond to worries of stigmatization with secrecy compared to their White and Black counterparts²⁷. This silence and difficulty communicating a problem was perceived as a barrier to seeking care²⁷.

Siddiqui et al. compared barriers/facilitators between racial and ethnic groups²². Black and Latina focus-group participants shared that they, themselves, and members within their community, were less likely to be aware of urinary incontinence as these conditions were neither discussed within the family nor publicized within their communities. Black and Latina respondents expressed a greater desire for more open forums within the media/social outlets and more services (e.g. support groups). White respondents, contrarily, expressed having had some knowledge of PFDs as they were exposed to these topics at a younger age. Further, White focus group participants expressed a greater reliance on self-education with the assistance of the internet ²². Lastly, the repeated theme of Latina women favoring secrecy in addressing their PFD conditions was noted also described by Elstad et al. ^22,27.

Conversely, Welch et al. narrowed in on physician-provider factors where AA/Hispanic and White participants identified similar themes related to the management of their PFD conditions and their self-perceived outcome. These highlighted themes identified included practicing self-autonomy, care-mediated satisfaction, and enhanced well-being conferred by even partial relief of symptoms²⁸.

Brown et al. studied and compared barriers to ABL care for White, African American, and Latina persons. However, the results were not stratified by race/ethnicity²⁶.

Quality Assessment of Studies:

Nine of the studies met criteria for high quality and 3 for moderate quality using the CASP tool (Table 3). The criterion that was most often not met to completion centered around the impact of the relationship between researchers and participants on study aims.

Table 3.

Quality Assessment Using Critical Appraisal Skills Programme (CASP) Tool

Author (year of study)	CASP Criteria										Total Score	Rating
	1	2	3	4	5	6	7	8	9	10
Longworth et al (2003)	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	16	Moderate Quality
Bradway et al (2006)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Can’t Tell/ Partly	Can’t Tell/ Partly	Yes	Yes	17	Moderate Quality
Bradway et al (2008)	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Can’t Tell/ Partly	17	Moderate Quality
Elstad et al (2010)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Yes	19	High Quality
Welch et al (2012)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Yes	20	High Quality
Sevilla et al (2013)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	Yes	Yes	18	High Quality
Dunivan et al (2014)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Can’t Tell/ Partly	18	High Quality
Siddiqui et al (2016)	Yes	Yes	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	19	High Quality
Alas et al (2016)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Yes	19	High Quality
Brown et al (2017)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Yes	19	High Quality
Jackson et al (2017)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Yes	Yes	Yes	19	High Quality
Maldonado et al (2021)	Yes	Yes	Yes	Yes	Yes	Can’t Tell/ Partly	Yes	Can’t Tell/ Partly	Yes	Yes	18	High Quality
CASP criteria: 1. Was there a clear statement of the aims of the research? 2. Is a qualitative methodology appropriate? 3. Was the research design appropriate to address the aims of the research? 4. Was the recruitment strategy appropriate to the aims of the research? 5. Was the data collected in a way that addressed the research issue? 6. Has the relationship between researcher and participants been adequately considered? 7. Have ethical issues been taken into consideration? 8. Was the data analysis sufficiently rigorous? 9. Is there a clear statement of findings? 10. How valuable is the research?						CASP criteria score: • Criterion is completely met: “Yes” = 2 • Criterion is partially met or can’t tell: “Can’t Tell/Partly” = 1 • Criterion not applicable, not met, or not mentioned: “No” = 0 Total score: • High quality, score 18 – 20  • Moderate quality, score 15 – 17 • Low quality, score < 15

Discussion:

This review examines the barriers and facilitators to urogynecologic care for pelvic floor disorders in racial/ethnic minority women in the United States through analysis of recent qualitative studies. Notable findings include only 12 studies met criteria, most barriers identified were within physician/healthcare provider or patient-associated themes, and few systems-associated barriers and facilitators were reported. Additionally, study cohorts were small and heterogenous with differing racial/ethnic backgrounds, geographic location within the United States and study time frame. These collective findings magnify the paucity of published literature on barriers to care of pelvic floor disorders for racial/ethnic minorities in the US.

Largely, patients indicated high value in their ability to communicate and trust their physician/health care provider. Lack of trust with the provider was associated with reports of the provider not listening, not asking questions, downplaying/minimizing symptoms, offering more conservative therapies, poor interpreter experiences, and not providing adequate information for the patient that would allow for autonomy and informed decision making. We found that there was overlap between identified barriers to care for UI and ABL which suggests that interventions to promote care seeking may be impactful for all pelvic floor disorders.

Notably absent in our review were identified barriers of systemic racism. Systemic racism has been identified as a fundamental cause of health inequities^29–31. While systemic racism was not specified verbatim in identified themes of these studies or explicitly in patient narratives, it is clear that systemic racism is the root cause of many stated physician/provider associated, patient associated, and system associated barriers to care. Many of these barriers are embedded in the US healthcare system and also more broadly reflect the values and cultural norms of our society. Interestingly, while language and gender concordance came up as barriers and facilitators to urogynecologic care, race did not. We do not know the race of the research team members. However, if there was racial/ethnic discordance between study participants and interviewing research team members, these participants may not have felt comfortable discussing race/ethnicity or fully disclosing their perspectives. When research focuses on solely on race rather than the impact of racism and social determinants, there is limitation in identifying drivers of observed racial differences, protective factors, and mechanisms of resilience against adverse social determinants of health^9,12. Future studies must be intentional in measuring and accounting for systemic racism and discrimination in health disparities.

Barriers to care data were not stratified by race/ethnicity in all of the studies. Some studies focused on a cohort of participants who all identified similarly by race or ethnicity rather than having groups to compare. Some race/ethnic groups were not represented at all (specifically American Indian, Asian, Arabic) or had few participants overall. There are likely multiple contributing factors regarding why some racial/ethnic groups were not represented in this cohort of studies. Access to research opportunities, research recruitment strategies, and notably, medical mistrust from potential participants (limiting interest in research) are all likely factors. One third of studies in this cohort did not report race information. Additionally, the approach to how race/ethnicity was measured (e.g. self-report, use of set categories, etc.) was not consistently indicated for each of these studies. Traditional race/ethnicity categories do not accurately identify populations. The use of broad racial and ethnic classifications schemas may perpetuate misinformation about disparities in diagnoses and treatment, and these broad classifications have the potential to exclude patients from reporting race/ethnicity in the way they may self-identify⁹. Lack of diverse racial/ethnic representation in research and lack of attaining racial/ethnic demographic information limits the ability to interpret study findings^9,32,33.

Additionally, the absence of reported themes associated with immigration status may be related to populations selected for this study. It is important to note that these patients were all care seeking. Perspectives from persons who may be experiencing PFDs but not actively seeking urogynecology is limited. Only 1 of 12 studies in this review included participants who were not actively care-seeking. Populations of persons who are not care-seeking should be included in future research as there may be major differences in barriers to care that have not yet been identified.

Many more barriers to care were identified compared to facilitators to care in these interview and focus group-based studies. While it is possible that there are fewer facilitating factors to urogynecologic care for racial/ethnic minority persons, it is also likely that these studies did not equally focus on ascertaining perspectives on barriers and facilitators to care.

Limitations of this analysis include small sample sizes (per study and collectively amongst the studies), incomplete racial/ethnic representation, and incomplete geographic representation which limits generalizability. We also only analyzed qualitative research studies which was notably not inclusive of all racial/ethnic minority groups. Our screening process identified 30 other analyses using quantitative methods which may provide some insight to barriers to urogynecologic care. The absence of these studies limits interpretation of our findings. However, we intentionally focused our review on qualitative studies given the rich nature of data acquired with this methodology noting that grounded theory and thematic saturation are often sought after which lends to the likelihood that more broad findings are reported. Strengths of this study includes its rigorous, systematic approach, inclusion of heterogenous study populations, and inclusion of study appraisal using the CASP tool.

In summary, identified barriers and facilitators to urogynecologic care for racial/ethnic minority persons are largely related to provider and patient associated factors, but are likely not fully represented in the published literature. There are many opportunities for optimizing future research that better identifies barriers and facilitators to urogynecologic care-seeking by race/ethnic group. Researchers must be intentional about capturing populations that are racially/ethnically diverse. Use of a framework for analyzing health disparities, that is inclusive of social determinants of health as well as biologic, demographic, physical and environmental factors, may allow for a better understanding of differences by racial/ethnic group^9,12,34,35.

“Why This Matters?”:

This systematic review demonstrates the continued paucity of research on racial disparities in urogynecologic care and general health care in the United States. While there are some studies that provide insight to barriers to care, this review highlights the limited ability to generalize or apply findings due to small study cohorts, varied methods in the capture of race/ethnicity demographic information, and regional recruitment limitations. In addition, most studies recruited patients from a subspeciality clinic or health system, thus limiting our interpretation of barriers for women who have been unable to access care. Finally, as we continue to understand the impact of systemic racism in healthcare, the studies we reviewed failed to acknowledge or discuss racism as the root cause of barriers that racial/ethnic minority patients encounter. Future research should aim to better identify barriers to care for broad, diverse racial/ethnic populations.